The Mighty Logo

What School Reports Don't Show About My Daughter With Down Syndrome

The most helpful emails in health
Browse our free newsletters

It’s school report time for my daughter Evie, who has Down syndrome. As lovely as the comments about her are, it still hurts to read certain things.

Her attendance stands at 79.34 percent, including one unauthorized absence. The school average is 97.1 percent. An attendance of below 89 percent deems a referral to the Educational Welfare Officer for monitoring or intervention.

I know there will be no EWO referral. I know Evie will be exempt from that.

I also know that the one unauthorized absence refers to one late mark — a mark given because I struggled at the start of the term to get her into school, when her thyroid function was beginning to fall and her anxiety levels were through the roof. Ever seen an anxious 7-year-old with learning difficulties and sensory processing issues? Ever tried to make them do something they don’t want to do? The fact that I managed to get her into school at all that day deserves some type of award, not a negative mark.

Evie has a low immune system and sleep difficulties, plus her underactive thyroid causes her a number of issues –- lethargy, anxiety, skin conditions. Three of those authorized absences were caused by medical appointments, and many more were due to illness.

Evie’s classmates this year have taken their SAT tests. Evie hasn’t, and rightly so. Her school has still sent us the information about the SATs and results.

I know we have to have this, all of this information. But the phraseology on these documents is such that it truly hurts.

“BLW” – is awarded if the pupil is below the standard of the tests.

Cheers, thanks for that.

While Evie isn’t at that level, why is all the phraseology so negative? Why on earth hasn’t our government or whoever designed these codes thought about this a little more? Why not put “not tested?” All children are worth more than a code or a mark. They are all amazing, each and every one of them.

I know that I should pretend that none of this bothers us. But it does.

I know that there are valid reasons behind each and every absence.

But it still hurts.

Just like every time I have to complete a form that I feel demands a character assassination of my own child. I have to list her weaknesses to get her the support that she needs.

Evie gives so much to this world. I don’t blame her school in any way for sending me the information. But surely there is a better way. All of this preoccupation with best at this, needs to work on that, test this and fail that… it’s no way to live.

I say all of this as a geek who loved tests and exams, who still loves to read and research. I know that not everyone is like me. I also see that the monitoring by the government, however misguided, is a way of trying to encourage and assist with learning. But if you don’t love to read or research, how will telling you at age 7 that you need to try harder help? It only makes them feel worth less than their contemporaries.

Evie may not understand any of this right now, but on her behalf and those of all her peers, I am incensed. They are just children. We learn better when we are happy, when learning is fun and natural. But instead let’s add more pressure to the teachers upon whom the results will also reflect. Let’s just add to their workload. Instead of allowing them to guide our children gently and with encouragement, let’s make their job even harder. What a waste of time, energy, emotion and money.

Evie is a valued member of her class. She is described as “bubbly and energetic.” She has progressed so well of late, particularly with reading, her favorite thing to do. Receiving negative content, no matter how well intended, obviously has a negative impact. Yes, we’ll brush it aside and carry on regardless, but it’s still there and next report, we’ll brace ourselves to read it once again.

Our children have so much to give. Maybe Evie isn’t going to be a rocket scientist, but then how many of us are?

Evie can sense when I’m sad; she knows when and how to make us laugh. According to one of her school friends, “Evie is the only one who checks on them when they fall.” A teacher told me that Evie runs around after another child and mothers her, fetches and carries for her…too much sometimes. Her giggle is magnificent and contagious.

These are the skills I want her to have.





They are true gifts. You can’t teach them or buy them. They are inherent within her. She is a true gem. A rare find in this topsy-turvy world of ours.

Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.

Originally published: August 1, 2016
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home